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Patient Advocate ･ Public Speaker ･ Strategic Communications Professional + Social Strategist ･ Host of Achondroplasia Research Conference

Recent Posts

2021 Achondroplasia Research Conference Jul 12, 2021
Born Small Apr 24, 2021
Never Change, but Never Stay the Same Apr 8, 2021
Rare Disease Day 2021 Feb 28, 2021
What Matters to Me Feb 21, 2021
Growth Awareness Day Sep 20, 2020

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what’s on my mind

@chancrews

･ look at me, I’m Chandler. could I HAVE anymo

･ look at me, I’m Chandler. could I HAVE anymore clothes from @physicaltherapyinstitute? the answer is no, no I can’t 🥰

it hasn’t really been anyone’s year, but #pti_ar will always be there for you, rain or shine, or even when your job’s a joke, you’re broke, or your love life’s DOA…so go see them for all your rehab needs (and get a shirt while you’re at it) 💙

･･･
#friends #chandlerbing #achondroplasia #dwarfism #dwarfismawareness #skeletaldysplasia #limblengthening #itsathing #physicaltherapy #orthopedicsurgery #patientadvocate #patientadvocacy

･ #tbt ft. the only #selfie that I, actually #Dr

･ #tbt ft. the only #selfie that I, actually #DrHerzenberg, took from last weekend…which I’m still processing…I think I’m mostly caught up on all my emails, but if you’ve emailed me and you’re reading this post and I haven’t replied, a response is coming, I swear ✋🏻😅

It’s crazy to me that in the first 3 years of this event, I’ve had it all of 3 ways: in-person, virtual, and now hybrid. This year, up until the day of, my nerves were starting to get the best of me. I kept thinking to myself, “what the hell? 😫 I should’ve just made this a full-on virtual event instead of a hybrid because who wants to travel right now anyways?” But for those who did attend in person, their responses have meant the world to me – especially one from a parent of a baby with #achondroplasia who isn’t even a year old yet. The parent was so appreciative of getting able to meet 1:1 with physicians and the presenters in attendance, which is the very reason I started this event 3 years ago...so those affected by achondroplasia can meet with the physicians and researchers who are directly behind the developing treatments, both pharmaceutical and surgical, in a safe environment without fear of ridicule for just wanting to be aware of the options out there 💜

Thank you to the presenters, sponsors, & supporters from @nemours, @childrensnational, @murdoch_childrens, @limblengthmd, @biomarinofficial, @pfizerinc, #AscendisPharma, #QEDtherapeutics, @lagrippe_research, and @kristen.a.miller who was the ONLY person who noticed my dress photoshopping skills onto my Bitmoji and who moderated the Pharma Q&A 💖

A special thank you to Jennifer Rizzolo and the entire staff at @sonestabaltimore/@sonestahotels and Justin Day & his team from @encore_global for being the operations behind the scenes 🎛

And to everyone who told me I can relax now, I’m not. Ideas are already flowing for 2022 👩🏼‍💻 stay tuned, y’all 🤪

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#achondropalsiaresearch #dwarfismawarness #skeletaldysplasia #limblengthening #vosoritide #VOXOGO #recifercept #transconcnp #infigratinib #hypochondroplasia #conference #nonprofit #eventplanner #virtualevent #patientadvocate #patientadvocacy #zarawoman #throwbackthursday

･ my two favorite dudes 💕 my dad has this thi

･ my two favorite dudes 💕 my dad has this thing about his nose being touched - very big peeve…yet every time my sister and I have gotten a pet, the first thing they do is boop noses with our dad — annoying him, but also instantly making him fall in love — probably more than us. happy #fathersday to the raddest & grooviest dad there is ☮️ thanks for teaching me to never take 💩 from anyone, unless it’s picking up after Beau, and for always making me laugh no matter how bad of a mood I’m in – love you, old man 🧡

･ Dr. Gavriil Abramovich #Ilizarov was born 100

･ Dr. Gavriil Abramovich #Ilizarov was born 100 years ago today 🥳

He was only 30 when he developed a system of distraction osteogenesis 🛠

The Ilizarov #externalfixator system he developed in 1951 went on to revolutionize the treatment of complex orthopedic issues, such as limb alignment/bowed legs in #achondroplasia – in other words, he’s the very reason why #limblengthening is a thing today 💪🏻

Because of him, we now have the #TaylorSpatialFrame which is what was used on my tibias for both of my leg lengthenings and new internal lengthening devices which are so popular today ✨

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#dwarfism #dwarfismawareness #skeletaldysplasia #patientadvocate #patientadvocacy #orthopedics #orthopedicsurgery #pediatricorthopedics #orthopedicsurgeon

COPYRIGHT © 2021 · CHANDLER CREWS · HEARTEN MADE

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